SEX AFTER SPINAL CORD INJURY

Dating

Engaging in social interaction in the hopes of finding love, or even just sex, may seem very daunting. Many quadriplegics find partners after online dating. Others find love where we least expect it. But first we must take the initiative and regain some confidence. Some of us aren’t dating because we feel like we would be a burden, and limit our partner’s ability to live the life they want. Some of us struggle with the vulnerable spot we’re in, and with trust.

When creating an online dating profile, be honest about what/who you’re looking for. Be honest about your disability. Remember that’s just one detail of who you are. Talk about all your other great qualities. Be sure to answer questions about your disability with honesty, and if you aren’t comfortable discussing something, be honest about that too.

Make it clear to any potential partners that the wheelchair you often sit in does not define you, nor does your disability make you needy or emotionally dependent. Let your words reflect your strength of character and independence of mind. Finally, talk about what kind of a partner you are looking for. Don’t compromise! You can still be selective and look for someone with the values and personality traits you love in a partner.

“I was extremely honest about my situation up front [on dating apps] and still had people contacting me. However, many did not pan out. Also, there were some creeps.” Tanisha, C5-6

Consider seeing a therapist together. Sexuality can be part of recovery if you have a partner willing to participate with you.

Encourage your partner to seek support from other partners of quads. Most social media support groups for spinal cord injury allow caregivers and partners to join. For partners of men with SCI check out WIVES AND GIRLFRIENDS OF SCI on Facebook.

When your caregiver doubles as your partner, a new dynamic is added to the relationship. Some quads find it doesn't work for their family at all. Every relationship is different and you'll find what works for you.

“I made sure to find a person that I could trust and that means not being intimate until I got to know him. I’ve learned one thing, a woman’s body is still a woman’s body even when she’s disabled. A man will still desire us, especially when we have confidence in our female abilities.” Lupita, C5

Online dating comes with challenges: catfishing (people with fake identities), devotees (people with sexual attraction to disability). If you have doubts about a person’s identity, ask for a video chat. Some dating sites even include a background check feature.

“Any time I meet up with a new guy I might hook up with, I meet him first in public several times. If I do decide to see him privately it’s never at his place, always mine. I always have a friend there in another room, so one quick text or loud yell and my friend can come to my rescue.” Sheila, C5-6

Relationships

Marriages and partnerships that withstand a quadriplegia diagnosis face the additional challenge of continuing a sexual relationship. Both partners must be patient, dedicated, and understanding. It will be trial and error as you explore the sexual possibilities together.

Keep communication open. Educate yourselves together. Involve your partner in your rehab and discuss sexuality with Occupational Therapy together if possible.

"Some underlying problems can be fixed and some cannot but I urge you if your significant other is your full-time caregiver things will not get better; you need to give them a break you need to get your own private caregivers and keep it separated. I've learned this from experience.” Ken, C5

Sexual Identity

How do you get to that place, where you feel confident enough to try, or even feel sensual and sexual, feel desire and desirable again?

Maintaining a sexual identity and regaining sexual confidence may be far from your mind directly post injury, but in the back of it there may be a voice telling you that sex is over for you. Don’t listen.

“I am more uncomfortable with my body now than I was in the beginning. I didn’t necessarily feel sexy, but atrophy hadn’t kicked in yet and so I still looked the same.” Tanisha, C5-6

We all battle emotions when it comes to our sexuality. Of course we’re wary of engaging in sexual activity in our newly disabled bodies. It takes time to accept your changed body, but it’s important to come to terms with the loss of function and the physical changes. Weight gain (or loss), muscle loss, contracture, and don’t get us started on the quad belly- body image can be an issue for quads as our bodies change.

Significant insecurities may have repercussions for sexuality and self-image. After my own injury I felt ashamed to confess that I still had a desire for intimacy and sex. I didn’t want people to pity me because I was now undesirable and couldn’t get the intimacy I craved. I started internalizing that societal misconception of people with disabilities as asexual beings. After all, I could no longer use body signals to convey sexuality.

While our overt sexual expression may be diminished, this doesn’t mean our sexuality is gone.

Society can be so uncomfortable with disability that aversion to common physical interactions like general touching, a hug, or a pat on the shoulder, is experienced less by quadripegics. This can contribute to lack of confidence about sexual identity.

“It’s one of the hardest things to do after becoming a victim of a spinal cord injury. Regaining confidence after your whole life and body has been changed is extremely hard. I remember being so embarrassed of my new body and my wheelchair. I spent years seeking validation from others. Years taking attention anywhere I could get it. Years telling myself how ugly my body was and how nobody would ever love a useless body like mine. Years lying to myself, because someone does love this body.

Someone loves how strong this body is. How much of a fighter this body is. How much this body goes through and still continues to survive. That someone is ME. It took me years to realize how amazing it is that a body can go through so much trauma and still live. Years to realize how amazing it is that my mental state can go through hell and come back more positive and stronger than ever. It takes a tough person to go through so much and continue to love life and everything it has to offer. Be proud of the things you have survived. There will always be obstacles in life, but overcoming those obstacles and learning from them is where you truly find yourself.” Kaley, C5-6

Sex

As quadriplegics with complete injuries, we are bound to hear the question, “Can you have sex?” enough times to be significantly annoyed. Yes, we can typically have sex.

Many dynamics affect our decisions about engaging in sexual experiences after injury. Of course whether or not and in what context we were sexually active pre-injury will be one determining factor. Relationship status factors in, too.

For some of us, post injury sexuality isn’t something we are comfortable with immediately, after some time, or ever again. That’s OK. Everyone is different.

Every injury is different, too. The level and completeness of spinal cord injury are major determinants of sexual function. Pain, spasticity, pressure ulcers, sensory loss, and lack of bowel and bladder control, may lead to dissatisfaction with sexual intimacy. For some, the ability to engage in sexual activity could be dictated by physical issues, despite sexual desire. For others, the act of sexual penetration may become less important and stimulation of alternative erogenous zones may become more pleasurable. Proceed with caution when engaging in sex. Erections and sexual stimulation can cause autonomic dysreflexia, though severe A.D. associated with sexual activity is uncommon.

Limited literature about sexual function after a quadriplegia diagnosis is available, and sexuality may not be a topic your occupational therapy covers at all, but it should; Most spinal cord injuries occur during the years when reproductive and sexual capacities are at their peak. In spite of the physical limitations of quadriplegia, many quads see sexual intimacy as an important part of their lives.

While society may be uncomfortable, the spinal cord injury and quadripegic community online normalizes sexuality.

Women and men with spinal cord injury report better sexual satisfaction if they are in an enduring relationship.

Sex will be different now. Experiment to discover what works for you. Genital function isn’t always as important to sexual satisfaction as partner satisfaction and relationship quality.

The function of the genitals is almost always affected by SCI, by alteration, reduction, or complete loss of sensation. Physical stimulation, even without sensation, can cause lubrication and erections as a “reflexive” response.

In both injured and uninjured people, the brain is responsible for the way sensations of climax are perceived. The qualitative experiences associated with climax are modulated by the brain, rather than a specific area of the body. The vagus nerve bypasses the spinal cord and carries sensory information from the genitals directly to the brain.

Stimulation to areas above the area of injury (head, ears, neck) may be perceived as erogenous and even evoke genital awareness in the absence of genital sensation. The area at the level of injury can become sexually pleasurable.

“My first time with someone when it went well was pretty amazing. He was vocal with me about him entering my body and just more verbal and respectful to my situation. He would describe touching me in the places he knew I couldn’t feel so that, mentally, I would still be able to feel in my own way. It was appreciated. I could feel main initial penetration and then of course the movement of my body as we were having sex. The more verbal and descriptive my partner is the better.” Tanisha C4/5/6

Fertility

Spinal cord injury usually doesn't affect women's fertility. Men may experience difficulty ejaculating. One of the chief concerns quadriplegic men have is the ability to achieve and maintain an erection. Men can try male vibrators and body wands, pharmaceutical drugs or shots. Another erection-achieving aid is the vacuum erection device, which causes penile engorgement by negative pressure. Battery-operated devices require less hand dexterity than the manual option.

Orgasm can still occur in men who are not capable of ejaculation and is not determined by completeness of the spinal cord injury. Quadriplegic men experience testosterone deficiency at a higher rate than non disabled men but low testosterone does not always directly cause infertility, just decreased production of sperm. Miami Project for Paralysis is the leader in sperm retrieval of men with SCI. They have discovered that sperm motility is better when retrieved via stimulation.

A Danish company called Fertility Healthcare created the Ferticare Vibrator. It’s fairly expensive at around $900, but it offers high vibration stimulation that can help some quad men ejaculate. You can also try a traditional penis vibrator (around $40). Many men with SCI do not have success with this method, but there’s still IVF.

The surgical extraction of semen (which is used to inseminate an egg and then implanted in a female) is known as in vitro fertilization (IVF). The cost of IVF is $8,000 - $10,000 a cycle. Many couples have to do this several times.

Devotees

Women in particular may discover that our social media presence attracts the attention of men who are interested in us because of our disability. They have been given the unofficial title “devotee". (There are women as well, but devotees are typically men.)

Behaviorists believe that the sexualization of disability may result from early, accidental associations where the concept of a disabled body became linked with sexual arousal. Some devotees report caring for a disabled relative at a young age. Another predisposing factor is difficulty forming relationships. People with this attraction may have been deprived of normal social sexual contacts, so they seek gratification through less socially acceptable means.

It’s not uncommon for devotees to want to see the pragmatics of living with disability. Imagery of quadriplegic individuals being cared for, transferred, fed and dressed result in arousal.

Some devotees secretly film disabled people in public or steal their images from social media. Some harass us online. Sometimes they make fake profiles and pretend they are disabled too. The online quadripegic community tries to keep track of devotees we discover and we warn one another about the profiles that harass us. Persistent messages requesting details of your sensory and motor function is a big red flag. Ask to video chat to confirm a person’s identity. On most social media platforms you can block and report people who harass you.

For information on pregnancy and childbirth check out this page:

PARENTING WITH PARALYSIS